Love Not Fear

There’s a flash blog this Friday. I’m posting my contribution early to signal boost a bit – entries are due by Thursday at 12:00 PM, so if you’re going to join in the fun, you should get cracking! Click on the image for more details.

Love not fear. I’m finding this prompt hard to write about because, for me, love goes hand-in-hand with fear. To love someone is an act of great vulnerability. It opens us up to the possibility of loss and pain, and that’s frightening.

To love a child is an especially vulnerable act. In addition to all of the other fears that relationships can bring, there is a special fear that comes with parenting: the fear of failing our child.

Parenting is hard and confusing and by nature we all go into as rank newbies. What if we get it wrong? What if we make a colossal mistake and our child’s life is forever changed? What if we make a whole bunch of little mistakes and in the end that adds up to a colossal mistake? There is no greater responsibility than that of guiding another human being to adulthood.

When that human being is autistic, the stakes are suddenly portrayed as being so much higher.

Thanks to the culture of fear that’s risen up around autism, parents of autistic kids get handed an additional set of fears. They get an itemized list of all the things that are wrong with their child and all of things that their child won’t do and all of the ways that their child is behind other children. Their child might only be two or three years old, but the experts are already confidently making predictions about his prospects for employment or her prospects for college, of how unlikely it is that he’ll have children or that she’ll get married.

Parents of autistic kids hear burden and tragedy and epidemic and they sense that they should be very afraid. More afraid than parents of children who aren’t autistic.

Afraid of what exactly? That their child will turn out like me?

Because if the parents of a newly diagnosed autistic child were sitting here in front of me, I’d tell them that their child turning out like me would be a pretty awesome thing. Yes, being autistic is hard at times. Yes, we aren’t like most everyone else. Yes, an autistic child needs extra support and accommodations and will develop along an atypical trajectory.

That’s not something to be afraid of, though. There will be a steep learning curve at first, but there is a big community of autistic adults who can help. We were autistic kids once, so we know what it’s really like to grow up autistic. A lot of us are parents too, in fact, so we know about the ups and downs of raising a child. And we’re happy to help.

Why? Because we want our younger brothers and sisters on the spectrum to grow up in a culture that loves and accepts them. We don’t want their parents to fear for their future. We know that raising a child–any child–can be scary. But we’ve seen what happens when fear becomes the driving force in parenting. Without plenty of love to keep it in check, fear distorts and damages the parent-child bond. Worse, it robs a child of the one thing they need most–the security of knowing that they are loved by their parents, unconditionally.

Love and acceptance aren’t just catchy buzzwords. In fact, you’ll probably never see them in ad campaign for autism awareness. Why? Because they’re free. You don’t need any special training or a college degree or a research study to love and accept your child. You already have everything you need to start doing it right now.

“In Tales from the Darkside from 1983 – there is one episode where there is a monster in this boy’s room, and he advocates for himself and tells the monster ‘Hey this is my room’ and the monster backs off and the boy gets the power over his room.”

Then going deeper – he replays this part of the episode and explains some of the plot and dynamics as he sees he has caught my interest:

“Mom look – here the part where he advocates for himself. His dad is a real jerk. He thinks he should stop being 6 years old and be a man right now: he [the dad] thinks he has the right to do what he wants.”

Sensitive to my reluctance to watch scary stuff:

“Don’t worry, Mom, it’s not that scary – there is an octopus man under his bed and a buzz saw – but it is just his imagination… Here it comes. You have got to see how he advocates for himself.”

We watch together – and then move on to discuss the deeper aspects about how the boy in the segment advocates for his space and also with his father.

H is getting this stuff. He is understanding what it means to advocate for himself or others and he is developing an ever-stronger sense of his right to take a stand.

As parents we nurture this young man’s sense of self and his heart for social justice with our acceptance and love. Empowering my child in this way – requires a little bit of letting go.

Sometimes… actually… a lot of letting go.

And letting go can be scary… but it is important to understand that fear is mine…

I have to be willing stop holding the reins tightly and give H room to make decisions. Giving up control. This is love…

Love. Not. Fear.

I am open to other ways of seeing and doing and I work to set aside my reading of tone – so that I hear the intended message. This is not easy to do and it is sometimes a messy thing, particularly with a teenager… but I am supporting H in finding his voice. Sometimes this means I have to silence mine. This is love…

Love – not – fear!

Over a Thai dinner in Chicago, I told two friends that we had H enrolled in a Social Skills Group. (They almost sprayed their beverages at me…)

I waited a beat – then smirked and confessed: “It’s true he is hanging out and learning to play Magic the Gathering at a local collectables store. He is socializing there and connecting with others in a way that will help him find community.”

We laughed… and then more seriously talked about how this represents the authentic honouring of H and his interests in a way that creates opportunity for growth… without stigma. At times I have felt the pull and pressure to enroll my kid in therapies and interventions, but too often I have seen these done poorly. I have seen my own son (and others) anxious and shamed for not using strategies and skills people assume they should be using. I am working to offer information and strategies and opportunities to H in a way that does not make him feel like he is broken and needs to be fixed.

What follows is my contribution to #BoycottAutismSpeaks flash blog, #LoveNotFear. It is sparse. I wanted it to be more because I believe in this effort. I believe the rhetoric of tragedy and the push to fix what is not broken hurts the connection between children and their parents, and that breaks my heart.
However, I could not bring myself to write of how my life has changed so dramatically in the last four years. It is a beautiful thing, but some stories are not ready to be told.

I am safe now. I am safe.
Some days, I need to remind myself over and over. It becomes a mantra. I have to remind myself.
Some days I forget. Some days I just cannot believe.
Fear kept me alive for the over forty years I lived as a disposable human.

The fiction that I was less than human crumbled when I was faced with my own neurodiverse children. They are wonders. They are art. They are so fully human that it fills me with awe and sets my heart on fire. I never felt fear or disappointment in their deviance from some mythic norm. They are precisely as they should be. Yet, I see myself in them, and for forty plus years, I heard nothing but how I am damaged, defective, less than. I could not apply the corollary to these loves of mine. I have always, and will always love, accept, and treasure exactly who they are. I could live no other way, even in the absence of anyone who loved and accepted me. Love outweighed my life experience.http://itsbridgetsword.com/2014/02/13/love-not-fear/

Long time readers and friends (and probably people who don’t like me too) will know that I used to be a gymnast, that I play around on high powered trampolines when I can, that I have jumped off a cliff into freezing cold water (and can’t wait to do it again), that I climb rocks, and possibly that jumping out of a plane and similar things are my entire bucket list.

They may also know that because of medical conditions, the risk of losing awareness and control are greater for me, and also that the risks that come with injury are greater for me.

Your Autistic body is exquisite.
May it always respond to you. To your will alone.
You owe your gaze to no one.
May you rest it only on that which offers you contentment.
Your flapping hands express your joy.
May they laugh at those that seek to make them table ready.

Your Autistic spirit is on fire.
May it burn bright in sight of those who would extinguish it.
You owe compliance to no one.
May you incinerate the intentions of all those who would force it.
Your worthiness of humanity is infinite.
May it ignite the blazes of love and acceptance to which you are entitled.

Every part of you is Autistic.
And I love every part of you without qualification.
There will never be a “but” after my love.
May we scorch the earth of all that endangers your selfhood.

so, I finally heard about an Autistic flash blog before the deadline. not much before, but enough (I hope).

the theme is “love not fear”. I am not a parent, so I can’t really give advice on that. I can, however, talk about bath time…

bath time is wonderful. I can’t sense time passing so I have to sit next to the bath and watch it run. I sit in the warm, bright bathroom and knit. my current knitting project is a lace pattern that I’ve just about memorised, so it’s beautiful and engaging without being difficult. I sometimes find myself baby-talking at the beautiful stitches. when the bath is full, I strip off and carefully step in. I sit down and stroke the inside of the bath, dislodging the tiny bubbles. I watch the bubbles scurry to the surface. each one has a shadow, wriggling across the bottom of the bath, until the bubble bursts on the surface, producing a flash of refracted light on the bottom. my own, private, silent firework display. when I’m finished with the bubbles, I lay back, watch the ripples on the ceiling and let my mind wander. eventually, I also wash my hair.

Love v. Fear

I was going to share the definitions of love and fear from old faithful, Merriam-Webster, but the words seemed bland, lifeless. How can you make love and fear seem bland and lifeless? I don’t know, but check out Merriam-Webster, they did it beautifully. Dissatisfied, I went in search of something with a kick to it. Here’s what I found:

“One word frees us of all the weight and pain in life. That word is love.”– Sophocles

I just sat there and thought about it. That’s a hell of a lot for one little word to live up to. But it’s true isn’t it? When we love unconditionally, we are free whether it’s for a minute or for a lifetime. I feel that way about my kids. No matter how bad a day (or week, or month) I can look at my kids and the overwhelming love I have for them frees me of all the weight and pain in that instant.

By Paul Rice
This is being written with immense love for my little guy Noah as part of the Love Not Fear flashblog.

“Bird” we called you at birth when instead of crying you simply opened your mouth for sustenance,
You were utter perfection from that moment forward,
I love watching your little sister watch you with admiration,
You will never be flawed in our eyes,
I love watching you spin and run giggling uncontrollably,
You will never be forced to comply or conform,
I love hearing the creak of the bedroom door when you come in seeking reassurance from shadows on your bedroom walls,
You will never be afraid in your own home,
I love seeing your bright eyes when you are “being bad” on purpose,
You will never go a day without moments of happiness,
I love tasting your cooking while you wait for my reaction,
You will never be anything less than competent to me,
I vow to build you up “bird”, “buddy”, our dear Noah,
You will never feel anything but a part of our “imperfect perfect” family.

My son after leading his walk team at the annual fund raiser for the Autism Society of Southeast Wisconsin Dylan’s Run stopped to give whatever money was in his pocket to this man on the street. That’s love, that’s who my son is. He’s not a diagnosis, he’s a 16 year old with a heart of gold.

There’s nothing to be afraid of in the dark except your own imagination. Uncle Grandpa show

Early on in our relationship my Wonderful Hubby and I agreed that we wanted to have a large family. Our first pregnancy was unplanned, but our daughter was certainly not unwanted. We were young and brave and a little bit naive as we began our journey into parenting. It was a rocky start. We had some tough times.

After 3 years together, we spent some time re-evaluating our priorities and determining our intentions. We decided we wanted to have 6 children, and that we were committed to making sure that as our family grew we would structure our careers, our volunteer activities, our lives so that one of use would always be available to be the primary carer for our children.

Our daughter by 3 years old had grown to be an energetic and creative soul, who seemed to struggle with anxiety but had such a determined spirit and shared her fathers great sense of humour.

We added number 2- a quirky little guy with a winning smile and a happy disposition who hardly spoke and seemed to struggle with sensory input.

Number 3 arrived a non-sleeper who loved intensely and had compassion for others like I’ve never seen in a toddler.

We were tired, and busy, and still young- so we decided to stop a while and see how we felt about more kids in a few years. Around this time we learned about Autism through a friends journey and became pretty sure that MasterL was Autistic, but fear of what that label would cost him in society led us to put off seeking a diagnosis.

Then there was another unexpected pregnancy. This one ended at 12 weeks with the loss of our little one and the realisation that we had unquestioningly wanted this little life to join our family, even though we were not planning for it. So we began again in our intentional quest for that large family.

Number 4 arrived- a sweet little girl who adored her Daddy, her family and life in general.

It was around this time that Hubby began to noticeably struggle with his mood. We were separated for a few months during this year. I struggled with my fear that him returning to live with the kids and I would be too hard, but love won, and we have not looked back since the time we made our second conscious decision to partner with each other .

Number 5 arrived. A bright and active little girl who so desperately wanted to get into everything, had no sense of danger and experienced significant sensory challenges from the day she was born.

So we paused again to evaluate. Could we support our girl sufficiently if we were also caring for another new baby? Did we have the resources to provide what she and our other children needed if we had a 6th child arriving? The answer was no. MissG, as you regular readers know her, needed my full attention. She needed me to be available to help her navigate the difficult world she was facing. We decided to wait again and see what the next few years brought us.

In the 5 years after MissG joined our family MasterL was diagnosed Autistic, Wonderful Hubby was diagnosed Bipolar, MissG herself was diagnosed Autistic and at 17 years old E was diagnosed Biploar.

People felt sorry for us.
People said how hard our lives were.
People said how brave I was. How strong I was.

I felt sorry for myself sometimes.
I struggled to overcome the feeling of overwhelm I experienced.
I felt anything but brave and strong.

I made the mistake of listening to the mainstream discourse that said my life was difficult and my children were hard and my family was just going to be a statistical casualty in which my Autistic children would grow up to be less-productive-less-happy-less-than than others and my Bipolar family members would not be able to work and would end up committing suicide.

I listened to fear. I felt fear. And for a short while I cultivated fear. I let the “what ifs” rule my life. What if I can’t cope? What if others in the family can’t cope? What will people think of me having another baby knowing the chances are that child will have a disability? What if a new baby is disabled?

I battled my desire to have the 6th child I so wanted. And then I stopped. Mostly because I was too tired to keep the battling up. Fear was making me tired. Fear was making me stressed. Fear was causing me to worry about things that hadn’t happened. Fear was making me my own enemy.

I realised that the diagnoses my family members had received were a gift that gave us power. To know who you are is powerful and empowering. To find your tribe is strengthening. To learn what supports you need to succeed is life changing.

I realised I had been given the key to being what my family needed. The information about who they are is a precious thing. It gives me the knowledge I need to go and find out how best to help my family.

I realised I have the ability to choose fear or love.

And I choose love.

With choosing love comes choosing acceptance.

With choosing acceptance comes peace.

Peace in my heart. Peace in my mind. Peace in the core of my being.

I am content.

I would not change a thing about my life. I would not change a thing about my family.

Oh, there is a lot I would change about the world. But my family is fine just the way it is.

So in the end the choice to fall pregnant again was an easy one. All it involved was love.

Could I love another child? Absolutley.

Could the rest of the family love another child? Without a doubt.

Could I provide support to another child, no matter what that childs support needs were? Yes, and I was, and remain, completely willing to do that for all my children no matter the cost to me.

So Number 6 arrived. A boy. My first Caesaren after 5 natural births! Our biggest baby born at 4.5 kgs (9.9 pounds). A snuggler. A smiler. A joy to us all. All the older children adore him. He adores them.

On his first birthday I was shown a blog I’d not seen before, and I read this.

I immediately read it out loud to my Wonderful Hubby, and I bookmarked the blog and copied the quote into this blog post. Because I get what she is saying, and it is true for me too.

There was a point in my life at which if you had told me I would have a Biploar husband and daughter and Autistic children I would have intentionally chosen a different path. Because I didn’t know any better. And at that point fear would have robbed me of the wonderful life I have now. At that point I had an idea in my mind of what marriage, relationships, parenting would be like. I know now that no matter who I chose as my life partner and no matter who my children turned out to be that idea was wrong. None of us can predict what our lives will be like. None of us know when we choose to have children who those children will be and what will happen in their lives. It is a risk every single time.

My first 5 children were born before we officially knew the names of the challenges our family would have. My 6th child was born when we did know. As it turns out, the decision to have him in our family was just as easy as all the others. Because we made it from a place of love not fear.

“From the parenting perspective, I fail to understand how anyone would not benefit from a little ‘insider’ knowledge on what their child might be living. After all, many of them are living similar things.”

– Who could ask for a better resource than those who HAVE and ARE living as autistic in a neurotypical world – who share their neurology with our children? We neurotypical parents can only guess – autistic adults KNOW.